Bioethics Research Infrastructure Initiative: National Center on Minority Health

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Abstract The Tuskegee University (TU) National Center for Bioethics in Research and Health Care, in conjunction with our collaborators at Washington University, seeks support for a project focused on the development of comprehensive and effective approaches, strategies and programs to effectively increase minority recruitment and retention into clinical trials. Longstanding mistrust is a principal barrier to minority research participation and is substantially owing to the nation's longstanding history of mistreatment of diverse populations for biomedical research. Widening health disparities, increasing use of medical technologies and genetic information, and the cultural competency of researchers in an era of increased cultural and language diversity heighten the impact of these barriers. The Washington University (WU) Alzheimer's Disease Research Center's African American Outreach Satellite conducts minority outreach and recruitment programs and defines and addresses barriers to Alzheimer's disease research participation. This highly successful interdisciplinary model will be modified and replicated at both TU and WU with (i) a focus on enrolling minority elderly in clinical trials (in general), (ii) advancing the empirical knowledge of recruitment of minority elderly for clinical trials, (iii) elaborating underlying bioethical factors, and (iv) training researchers and healthcare professionals who serve aged populations. Specifically, TU will conduct a nationally significant bioethics training program for health professionals and concomitantly address bioethics in clinical research, inclusive of research designs, statistical analyses, health economics, health disparities, and health information access and dissemination. By building on the expertise and differential roles of each academic site, we proposed to effect the transition from limited and often anecdotal representations to a multifaceted, multidisciplinary, and robust partnership to yield an aggregate research design of greater consequentiality, owing the strands being built to create a research and training agenda much stronger than the sum of the individual parts. We hypothesize that a community-based, evidence-informed, multidisciplinary systematic recruitment and retention program will lead to increased recruitment and retention of underserved minorities to yield participation rates sufficient to achieve the objectives of clinical trials. Principal Investigator/Project Director: Williams, Luther S.